Posts in the Personal Category

A thing people ask me with some regularity is, “What’s a good book for someone who wants to get started in web design?” I’m here to review a book that’s one of the best I’ve seen, Create with Code: Build Your Own Website, written by Clyde Hatter of CoderDojo’s Dojo Bray in Ireland. I got my copy at my son’s elementary school Scholastic Book Fair earlier this year; it’s available from online booksellers and probably through local bookstores as well.

I’ll go into some details of what’s in it and what I think, and there will be some complaints. So I want to stress up front: this is an excellent book for people who want to learn web design, with the modifier if you’re available to help them out when they hit stumbling blocks. You aren’t going to have to hold their hands through the whole thing by any stretch, but there are moments where, for example, the filenames used in the text will mislead. (More on that anon.) For all that, it’s still an excellent book, and I recommend it.

The book is 94 pages, of which 88 pages are instructional, and none of it is filler—Mr. Hatter packs a surprising amount of good web design practice into those 88 pages. The pages themselves are filled with colorful design, and the text is easily readable. It’s aimed squarely at elementary-school readers, and it shows. That’s a good thing, I hasten to add. The tone is simple, uncomplicated, and stripped to the essentials. At no point does it condescend. It works well for any age, not just the suggested range of 7-17. I enjoyed reading it, even though I knew literally everything the book covers.

The organizing idea of the book is creating a small web site for a ninja band (!!!) called The Nanonauts. In the course of the book, the reader sets up a home page, an About Us page, a page listing upcoming concerts, and a couple more. Everything makes sense and interrelates, even if a couple of things feel ever so slightly forced.

Here’s a page-number timeline of concepts’ first introductions:

p. 6

Brainstorming site content and sketching a site map. Bear in mind here that the actual instructional text starts on page 6.

p. 10

Adding a style sheet to an HTML document via a link element.

p. 14

A nice breakdown of how images are loaded into the page, what the various (common) image attributes are and mean, and the importance of good alt text. On page 14.

p. 17

The concept of an empty element and how it differs from other elements.

pp. 20-24

An extended discussion of proper structure and good content for the web. It shows how using headings and paragraphs breaks up large text walls, makes the distinction between ordered and unordered lists, and demonstrates the importance of proper element nesting.

p. 25

Diving into CSS. A style sheet was added to the document back on page 10, but this is where CSS starts to be discussed in detail.

p. 28

Radial gradients! They went there! The syntax isn’t dissected and explained, but just showing working gradients clues readers in to their existence. There’s also an example of styling html separately from body, without making a super big deal out of it. This is a pattern throughout the rest of the book: many things are used without massively explaining them. The author relies on the reader to repeat the example and see what happens.

pp. 30-32

A really great explanation of hexadecimal color values. I’ve never seen better, to be honest. That’s followed by a similarly great breakdown of the uses for, and differences between, px, em, and % values for sizing.

p. 36

The first of several really lovely step-by-step explanations of style blocks. In this case, it’s styling a nav element with an unordered list of links, explaining the effects of each rule as it’s added.

pp. 50-52

An example of properly structuring and styling tabular data (in this case, a list of upcoming concerts).

p. 59

The box model and inline elements explained in sparing but useful detail. This includes a brief look at inline elements and the baseline, and vertical alignment thereof.

p. 74

Responsive web design! A nice introduction to media queries, and a quick primer on what responsive means and why it’s important.

p. 78

Floating images to wrap text around them. That segues into layout, using floats for the boxes enclosing the bits of content.

p. 88

Using web fonts (basically Google fonts).

p. 90

Putting your site online.

That isn’t everything that’s touched on in the book by a long shot—max-width and min-width show up early, as do :last-child, border-radius, and several more CSS features. As I said above, these are generally introduced without much detailed explanation. It’s a bold approach, but one that I think pays off handsomely. Trusting the reader to become interested enough to track down the details on their own leaves room to include more things to spark interest.

Pages 10 and 11. Not all pages are this text-heavy.

That said, there are some aspects that may—probably will—cause confusion. The biggest of these has to do with images. There are several instances of using img to add images to pages, as you’d expect. The author does provide a downloadable archive of assets, which is a little difficult to actually find (here’s a direct link), but the real problem is that once you extract the files, the filenames don’t match the filenames in print. For example, in the book there’s a reference to nanonauts.jpg. The corresponding file in the archive is NINJA_FACE_FORWARD.png. At another point, DSC03730.png turns out to actually be NINJA_GUITAR.png. There’s no indication of this whatsoever in the book.

I get it: mistakes happen, and sometimes digital assets get out of step with print. Nevertheless, I fear this could prove a major stumbling block for some readers. They see one filename in the book, and that filename doesn’t exist in the assets. Maybe they open up the asset images until they find the right one, and then maybe they figure out to replace the filename in the book with the one they found, and move on from there… but maybe they don’t. I’d be a lot happier if there were an errata note and mapping table on the download page, or the online archive’s assets were corrected.

Something similar happens on page 19, where the reader is directed to create a navigation link to songs.html when the page they’ve already created is called our-songs.html. This one is a lot more forgivable, since the filenames are at least close to each other. But again, it’s a place the reader might get lost and frustrated. The painful irony is that this error appears in a “NINJA TIP” box that starts out, “Be careful when you’re typing links. You have to get them exactly right!”

Another error of this kind happens in the section on adding a video to a page (p.45). All the markup is there, and the URL they supply in great big text loads a video just fine. The problem is that the video it loads is an ad for Scholastic, not the ninja-playing-a-guitar video the text very heavily implies it will be. I don’t know if it used to be a rock ninja shredding power chords and Scholastic replaced it or what, but it almost feels like a bait and switch. It was a little disheartening.

There’s one aspect I can’t quite make up my mind about, which is that just about everything in the book—text, design elements, media query breakpoints—is done using pixels. A couple of percentage widths show up near the very end, but not much is said about them. There is a very nice comparison of pixels, ems, and percentages on page 32, but with ems never being used (despite a claim to the contrary), readers are unlikely to use or understand them.

Now, I don’t style this way, and my every instinct rebels against it. But given that pixels really don’t mean what they used to, and that all modern browsers will scale pages up and down pretty seamlessly, is this a major problem? I’m not sure that it is. Either way, this does set readers on a specific initial path, and if that path bothers you, it’s worth knowing about so you can give them extra advice.

The third thing I found weird was the two pages devoted to embedding a live Google Map into one of the pages (showing the location of the Nanonauts’ next show). On the one hand, it’s cool in that it shows how some HTML elements (i.e., iframe) can serve as containers for external assets more complicated than images and videos, and having a live map show up in the page you’re building is probably pretty mind-blowing for someone just starting out. On the other, it’s kind of a fiddly and unusual use case: not many novice sites need an embedded widget calling an API.

I had less of a problem with the author showing a simple image-swapping-on-hover JavaScript solution, later in the book (even though my hindbrain kept chanting, “do that with CSS!”). It’s a simple example of scripting pieces of the page, and lets Mr. Hatter talk about the DOM and DOM scripting without getting super crazy about it.

The last thing I found a bit lacking was the closing two pages, which cover putting the site online. The author does their best with the two pages, and what’s there is correct, but it’s just not enough to help everyone get the results of their work online. I’m not sure two pages ever could be enough to help the novice audience. I’d have liked to see this get four pages, so there was room for more detail and more options. If you’re giving this book to someone to help them learn, my advice is to tell them up front that you’ll help them get their work online once they’ve finished the book.

Okay, all that said? I still absolutely recommend this as a beginners’ book. Nearly every topic the text introduces, and there are many I didn’t mention here, is covered just the right amount and in just the right way to get readers where they need to be, excited about what they’ve accomplished, and ready to learn more on their own. It’s pretty well up to date, at least as I write this, and isn’t likely to fall badly out of date any time soon. Approachable, accessible, and instructive.

Final grade: I give it a solid B+, only falling short of A level due to the filename mismatches.

At the end of last week, I posted this picture to Twitter and Facebook, and on Twitter it kind of took off.

On the left: the 2nd and 3rd editions of “CSS: The Definitive Guide”. On the right, a single copy of the fourth edition. 😳

My intent in posting it was to say, in not nearly so many words, “Look at how CSS has dramatically expanded its capabilities since the previous edition, and wow, I can’t believe Estelle and I did that much work!” I know we have 280 characters now, but I try not to blog places other than, well, my actual blog. (Welcome!)

The Twitter reaction was…interesting. And by interesting, I really do mean interesting. There were the people who responded with excitement and anticipation—thanks to you all!—but a whole lot of people who said, in effect, “This is what’s wrong with front end, all this accelerating complexity.”

Which was not what I was saying. And which is not, I think, what’s actually happened here, but it depends on what you mean by ”complexity”.

CSS has a great deal more capabilities than ever before, it’s true. In the sense of “how much there potentially is to know”, yes, CSS is more of a challenge.

But the core principles and mechanisms are no more complicated than they were a decade or even two decades ago. If anything, they’re easier to grasp now, because we don’t have to clutter our minds with float behaviors or inline layout just to try to lay out a page. Flexbox and Grid (chapters 12 and 13, by the way) make layout so much simpler than ever before, while simultaneously providing far more capability than ever before.

“How? How is that even possible?” you might ask, to which I would reply, “That’s what happens when you have systems that were designed from the outset to be used for layout.” Floats weren’t; they were a necessary hack. Inline-block wasn’t; that was a necessary hack. People did ingenious, brilliant things to make those tools work, yes. But they were always a perversion of original intent.

Whereas with Grid and Flexbox, we have things that were always meant to handle layout. That’s why, for example, they make vertical centering of elements a breeze. A breeze, people. I’ve been working with the new stuff long enough that I literally forget vertical centering is supposed to be difficult. I have similar amnesia about the struggle to balance layout needs with accessible source order. These problems are not 100% banished, but it’s to the point now that when I do run into these problems, it’s a surprise, and almost a personal affront. Like how you feel when you’ve been zooming along a near-empty highway for hours, enjoying the rush of wind and power, and then you come around a curve and all of a sudden there’s a roadblock of two slow-moving cars side by side, doing exactly the speed limit of all things, each refusing to pass the other.

I envy “the kids”, the ones just starting to learn front end now. They’re likely never going to know the pain of float drop, or wrestling with inline blocks, or not being able to center along one axis. They’re going to roll their eyes when we old-timers start grumbling about the old days and say, “Floats?!? Who ever thought floats would be a good way to lay out a page? That’s totally not what they’re for, anyone can see that! Were you all high as a kite, or just utterly stupid?” You know, the way “the kids” talked ten years ago, except then it was about using tables for layout.

So if you’ve written CSS in the past, CSS today is not significantly harder to understand, and probably a bit easier. There’s just a lot more of it. You might not be able to remember every single property and value, but that’s okay. Neither can I. I don’t think many (or any) of us can hold every last tiny piece of a serious programming language in our heads, either. We know the core things, and the patterns we learned, and some cool techniques, and there are the things we always have to look up because we don’t often use them.

I also think people saw the books in the picture and forgot about the time component. I checked the page number at the end of the last chapter for each book (thus omitting appendices and the index) and came up with the following chart.

Editions of CSS: The Definitive Guide

Whoa, right? But let’s chart those numbers again, this time taking date of publication into account.

Editions of CSS: The Definitive Guide over 18 years

Rather less crazy, I would say. It’s still an apparent upward trend, but think about all the new features that have come out since the 3rd Edition, or are coming out right now: gradients, multiple backgrounds, sticky positioning, flexbox, Grid, blending, filters, transforms, animation, and media queries, among others. A lot of really substantial capabilities. They don’t make CSS more convoluted, but instead extend it into new territories.

Speaking of which, a few people asked how I got the books to line up so neatly. I admit they’re being supported by a table there, but the real secret? Grid. So easy. Here, have a set of three “book spines” (each one a cite element) gridded out in supporting browsers, and still laid out just fine in older browsers.

See what I mean? That took me about 20 minutes all told, even though I’m using internal markup that’s probably not ideal, by putting grids in my grid so I can grid while I grid. I rearranged the 2nd-3rd-4th source order into the visual arrangement seen in the photo, and centered the text blocks vertically without using margins or padding or line height to fake it, just because I could. The grid layout is an enhancement: in older browsers, the spines render as a vertical stack, one atop the other, in chronological order.

Another five minutes, and I could neaten that rendering up further so the spines looked more consistent between grid-capable and grid-incapable browsers. Five to ten more minutes could get the O’Reilly logo and fish graphics into the black areas. Five more, and it would be neatly responsive. Maybe I’ll come back and fix it up to do those things, but for now, as far as I’m concerned, this will do nicely.

The other common response I got was, “Well, looks like it’s time for ‘CSS: The Good Parts’!” Fam, we already have “CSS: The Good Parts”. Estelle and I just wrote it. You can see it on the right side of the picture up above. Available now on paper or in electronic form!

CSS: The Definitive Guide, 4th Edition is wending its way to the reading public, and I have some updates on that.

The O’Reilly catalog still says October 2017, but for the physical copy, Barnes & Noble and Amazon are now listing a release date of November 5th, 2017, so we seem to have just missed that October release window I was hoping to hit. But not by much! The DRM-free version at eBooks is apparently available now, as are Nook and Kindle versions.

For those of you with access to O’Reilly’s Safari subscription service, there’s an older version of the book currently available. Apparently, so many people have joined the queue to get it that the content-update process breaks. (Our production editor was impressed.) O’Reilly’s engineering staff is aware of the problem and working on it, so hopefully by the time you read this, the problem will be resolved and the final copy online. If not, our apologies, and thanks for your patience.

If you’re wondering if this edition is for you, absolutely it is! But I would say that, wouldn’t I? As would my co-author Estelle. To help you decide, here’s the Table of Contents with a few brief notes on the new things contained therein (chapters marked ALL NEW! are chapters that didn’t exist at all in the 3rd Edition):

CSS and Documents – a brief overview of what CSS is for, how to apply it (including via HTTP headers!), basic syntax, media and feature queries

Selectors – all the selectors as of mid-2017, including :not(), validity pseudo-classes, the case-insensitivity modifier in attribute selectors, and more

Specificity and the Cascade – probably the least-changed chapter, this lays out the cascade in some detail

Values and Units – adds viewport units, ch (which does not actually mean “one character”), calc(), and various new color syntaxes like HSL and #RRGGBBAA patterns

Fonts – includes a lot about @font-face and the process of loading custom fonts, in addition to the classics like weight, style, variant, family, etc.

Text Properties – adds a fair amount of material on non-horizontal writing and alignment, writing modes, hyphenation, and so forth

Basic Visual Formatting – this is another chapter that didn’t change a huge amount from the 3rd Edition, though it does touch on the new values for display

Padding, Borders, Outlines, and Margins – to all the existing details on those basic topics, we’ve added border-radius and all the properties that affect image borders

Colors, Backgrounds, and Gradients – there are all the new background-related properties like background-size and background-clip, handling multiple background images, and the wonder world of linear and radial gradients, explained in more detail than anyone probably thought reasonable, plus there’s a section on box-shadow

Floating and Shapes – floating hasn’t changed much, but the section on Float Shapes is all new and pretty nifty, if I do say so myself

Positioning – this got a section on sticky positioning to go along with the classic positioning material

Flexible Box Layout – ALL NEW! – the ins and outs, the nitty-gritty, the pros and cons of Flexbox

Grid Layout – ALL NEW! – Grid is here and it’s hot; this chapter explores it in up-to-the-minute detail

Table Layout in CSS – the third of the minimally-updated chapters, this discusses how data tables are laid out

Lists and Generated Content – a surprisingly large amount of new material in this chapter, pretty much all centered around @counter-style and its capabilities and how you can create emoji counting systems

Transforms – ALL NEW! – rotating, scaling, translating, 3D effects, and more, all with a minimum of matrix math

Transitions – ALL NEW! – state-based animations and how to define them, introducing some of the basic animation concepts along the way

Animation – ALL NEW! – stateless animations, which can happen at any time, for any reason you choose to define, made possible through @keyframes and a bevy of new properties

Blending, Filtering, Compositing, and Masking – ALL NEW! – all (okay, almost all) the nifty things you used to do in Photoshop, now available natively in browsers, so you can do grayscale images that pop color on hover or click without having to produce two separate images

Media-Dependent Styles – this was almost ALL NEW!, but it’s a radically reworked chapter from the 3rd Edition with fewer bits about printing, no bits on audio, and a whole lot of details about media queries

And then the Appendices:

Animatable Properties – a list of CSS2.1 properties that are animatable, with a note on exactly what can be animated

Whew! After all that, you might be thinking that, much like Emacs, this book has everything. And I’d like to say that it does, but… it doesn’t. For example, I decided fairly late in the process to drop multicolumn properties. It was a tough decision, but when I started testing browser support and looking at the state of the specification, it felt too unstable to include. I’ve rushed explanations in past editions, and usually regretted it. (Although, fun fact: the 2nd Edition contains the only known documentation of the CSS Working Group’s multi-hour discussion on how the old clip property was supposed to work.) So I put multicolumn off for the next edition.

Still, there are far far far more examples of things added in than things left out, enough to make this edition twice as long as the previous. There’s been a lot of growth in CSS over the past decade, and I think Estelle and I have brought together something that will get you up to speed on very nearly all of it. For those of you eagerly waiting on a copy, we really hope you enjoy the result!

Yesterday afternoon, CSS: The Definitive Guide, 4th Edition went to the printers. Eighteen years after the First Edition hit shelves, eleven years after its predecessor came out, five years after I first started working on this edition, and thanks in no small part to Estelle Weyl and a parade of long-suffering editors at O’Reilly, the last changes were entered, the pages were locked, and the repository closed.

It comes in at 1,088 pages: almost exactly twice the length of the Third Edition, with six new chapters and a lot of overhauling of old chapters. Flexbox, Grid, filtering, blending, clipping and masking, float shapes, animations and transitions, transforms, image borders, counting systems, custom properties (a.k.a. CSS variables), media and feature queries—they’re all in there, and a whole lot more besides. Gradients got a major new section in what used to be called just “Colors and Backgrounds” and is now “Colors, Backgrounds, and Gradients”. And all the new background properties! So many new background properties.

We didn’t skimp on the visuals, either. The book has, if I counted correctly, a total of 778 figures. Almost all of them were captured in-browser, and you can download or clone all the files from GitHub. If you’d rather just browse them online, you can do so thanks to GitHub Pages. That’s also where to find the transition and animation examples that are referenced in the text, but not figures themselves (detailed animation being somewhat difficult to represent on paper). If we add figures and animation examples together, there are 826 elements supporting the main text. Which feels like a lot to me.

The book will be available in both tree-wafer and glowing-display formats from your favorite supplier of such things; e.g., Amazon. (If you’re going to buy through Amazon and are inclined to support another aspect of my life, please designate Rebecca’s Gift as your Amazon Smile recipient before buying the book.) I also hear tell it will be available DRM-free from eBooks.com, and potentially in PDF form for those who prefer it. O’Reilly doesn’t sell books directly any more, but I do believe it will be avialable to those with Safari subscriptions.

I’ll have more to say about the book and its contents as the release date draws closer. Last I heard, it should be out by the end of this month, but as always, release dates can slip for any number of reasons. Even if this release does slip, it should still come out no later than early November.

(Let’s hope I didn’t just jinx that.)

This is always a tense and exhilarating time. What if I got a huge piece completely wrong? What if I made the wrong calls on what to include and what to defer to the next edition? What if I missed egregious typos? What if nobody likes it? Basically, the same doubts that strike most any author. But there’s also the incredible feeling of a project brought to its conclusion and the anticipation of getting it into readers’ hands. This has been a longer-than-usual time coming, but as it usually does, the time has come at last. I hope you’re looking forward to it half as much as I am.

On Monday, July 3rd, as I sat in the living room of a house just a bit north of New York City, I pushed the last writing and editing changes to CSS: The Definitive Guide, Fourth Edition and notified the production department at O’Reilly that it was ready.

All twenty chapters, three appendices, and associated front matter are now in their hands.

It’s been a long and difficult journey to get here. Back in 2011-2012, I started updating chapters and releasing them as standalone books, for those who wanted to grab specific topics early. In mid-2013, I had to stop all work on the book, and wasn’t really able to get back into it until mid-2015. At that point, I realized that several new chapters had to be added—for example, when I started out on this edition, Flexbox and Grid were pie-in-the-sky ideas that might or might not come to pass. Feature queries weren’t a thing, back then. Filters and masks and blend modes were single-browser at best, when I started out. And forget about really complex list counters.

Now all those topics (and more!) have chapters, or at least major sections. Had I not been delayed two years, those topics might not have made it into the fourth edition. Instead, they’re in there, and this edition may well end up twice as long as the previous edition.

I also might not have brought on a co-author, the inestimable Estelle Weyl. If not for her contribution in new material and her close, expert review of the chapters I’d already written, this book might have been another year in the making. The Guide was always my baby, but I couldn’t be happier that I decided to share it with Estelle, nor prouder that her name will be on the cover with mine.

Speaking of major changes, I probably wouldn’t have learned AsciiDoc, nor adopted Atom as an authoring environment (I still use BBEdit for heavy-lift text processing, as well as most of my coding). O’Reilly used to be a “give us your Word docs!” shop like everyone else, but that toolchain doesn’t really exist any more, from what I can tell. In fact, the first few chapters I’d given them were in Word. When I finally returned to writing, they had to give me those chapters back as AsciiDoc exports, so I could make updates and push them to O’Reilly’s internal repository. The files I created to create figures in the book went into their own public repository, which I’ll get to reorganizing once the text is all settled and the figure numbers are locked in. (Primary to do: create chapter lists of figures, linked to the specific files that were used to create those figures. Secondary to do: clean up the cruft.)

As of this moment, the table of contents is:

Preface

CSS and Documents

Selectors

Specificity and the Cascade

Values, Units, and Colors

Fonts

Text Properties

Basic Visual Formatting

Padding, Borders, Outlines, and Margins

Colors, Backgrounds, and Gradients

Floating and Shapes

Positioning

Flexible Box Layout

Grid Layout

Table Layout in CSS

Lists and Generated Content

Transforms

Transitions

Animation

Filters, Blending, Clipping, and Masking

Media-Dependent Styling

Appendix A: Animatable Properties

Appendix B: Basic Property Reference

Appendix C: Color Equivalence Table

Disclaimer: the ordering and titles could potentially change, though I have no expectation of either.

I don’t have a specific timeline for release as yet, but as soon as I get one, I’ll let everyone know in a post here, as well as the usualchannels. I expect it to be relatively speedy, like the next couple of months. Once production does their thing, we’ll get it through the QC process—checking to make sure the figures are in the right places and sizes, making sure no syntax formatting got borked, that kind of thing—and then it’ll be a matter of getting it out the door.

And just in case anyone saw there was news about O’Reilly’s change in distribution and is wondering what that means: you can still buy the paper book or the e-book from your favorite retailer, whether that’s Amazon or someone else. You just won’t be able to buy direct from O’Reilly any more, except in the sense that subscribing to their Safari service gives you access to the e-book. That does mean a tiny bit less in royalties for me and Estelle, since direct paper sales were always the highest earners. Then again, hardly anyone ever bought their paper copies direct from O’Reilly, so honestly, the difference will be negligible. I might’ve been able to buy an extra cup of coffee or two, if I drank coffee.

It feels…well, honestly, it feels weird to have finally reached this point, after such a long time. I wish I’d gotten here sooner for a whole host of reasons, but this is where we are, and regardless of anything else, I’m proud of what Estelle and I have created. I’m really looking forward to getting into your hands.

This is my daughter Rebecca in 2013. She was 5¼ years old when I took this picture. Less than three days later, she almost died on an ER bed.

She’d been completely fine when we set out for vacation that year, and just seemed to come down with a virus or something just after we arrived. She got checked out at an urgent care center, where they diagnosed strep throat. But antibiotics didn’t help. She slowly got more and more sick. We finally took her to be checked out at a nearby hospital, who were just as stumped as we were. They were looking for a room to put her in when she seized and flatlined.

Just like that. She’d been ill, but not severely so. All of sudden, she was on the edge of death. The ER staff barely stabilized her, by intubating her and administering drugs to induce a coma.

There was a large tumor in the center of her brain. Our five-year-old girl, who so far as we knew was completely fine just days before, had aggressive brain cancer.

After a midnight life flight nobody was sure she would survive, she arrived in Philadelphia and had several cranial surgeries, spent more than a week in the pediatric intensive care unit, and then was transferred down a few levels to spend another two weeks on the recovery floor, slowly rebuilding the muscle strength she’d lost from more than a week of immobility.

Later, there were weeks on weeks of radiation and chemotherapy in Philadelphia. After the initial treatment was done, we came home to Cleveland for more chemotherapy.

This is her, hauling her baby brother Joshua up the slide in our backyard, and hauling her mom through the crowd at the local garlic festival. At a CureSearch walk with her siblings and dozens of friends and family. Just barely tolerating my terrible dad jokes, doing her utmost not to encourage me by laughing.

We did everything we could, sometimes through tears and sickening horror, but the treatments didn’t work. Rebecca died at home, surrounded by friends and family one final time, less than ten months after her cancer was discovered, in the early evening hours of June 7th, 2014, her sixth birthday.

In those ten months, the total retail cost of her procedures and treatments was $1,691,627.45. Nearly one point seven million US dollars.

We had health insurance—really good insurance, thanks to COSE’s group plans and my wife’s and my combined incomes. The insurance company’s negotiated rates meant they paid $991,537.29, or about 58% of the retail price.

We paid very little, comparatively speaking, until you counted the monthly premiums. All of it together, co-pays and premiums, was still in the low five figures. Which we were, fortunately, able to pay.

Without insurance, even if we’d been able to get the insurer’s rate, we’d have gone bankrupt. All our investments, our house, everything gone. If pre-existing conditions had prevented us from being covered, or if we’d been less fortunate and unable to afford premiums—bankrupted.

In which case, Rebecca’s brother and sister would have suffered her death, and the loss of their home and what precious little remained normal in their lives.

How many families live through that double hell? How many go completely broke trying to save their child? How many could have saved their children, with coverage that paid for life-saving treatments? How many never had any chance of saving their child, but ran out of money before treatment was complete and now believe their lack of insurance and money was what killed their child?

How many more will have to live with those unthinkable situations, if the House and Senate bills go forward?

The point, the essential point, is this: every family should have the chance to fight as hard as possible for their loved one’s life without going bankrupt in the process. And for those who cannot be saved, no family should be denied the knowledge that they didn’t have a chance. Because knowing that does provide some (small) measure of comfort.

The Affordable Care Act wasn’t perfect, and it was severely and willfully undercut after it launched, but it was a huge step in the right direction. The bill currently before Congress would be an enormous step back. I doubt that I’ll benefit from the tax cuts that are part of the bill, but if I do, I’ll commit every cent I get from them and more to unseat anyone who votes yes on this bill. I have let my senators know this.

I would spare every family the pain we endured, if I could, but nobody has that power. We do, together, have the power to help every family that must endure that pain, to give them access to the simple safety net they need, to concentrate everything they can on the struggle to heal.

I miss her every day, but I know that we did everything that could be done, including being able to afford the hospice care that kept her as comfortable as possible in her final hours, preventing the seizures and pain and fear that would have made her last moments a hell beyond endurance. Allowing her a peaceful end. Every family should have access to that.

Please think about what it means to take that ability away. Please think about what it means to take away the ability to avoid having to make those choices.

Three years ago, almost exactly to the minute as I publish this, I delivered the eulogy at my daughter’s funeral. A few months after that, reading it again, I discovered that when I wrote it, I didn’t really finish it. I understand why: I wrote it in the days after her death, and was not really able to think it through. It was only in hindsight that I realized what was missing.

So today, I’m publishing the eulogy as I would have written it, had I been of clearer mind. The final two sentences below are what I left off.

Rebecca was fierce. She beat adults in staring contests when she was two weeks old. Rebecca was joyful. Her laugh could fill a room and bring a smile to anyone who heard it. Rebecca was stubborn. She would often refuse to give in, even when it cost her something she wanted. Rebecca was kind, and loving, and mischievous, and oh so very ticklish.

She vibrated with energy. Her philosophy was essentially: never walk when you can skip, never skip when you can run, never run when you can dance, and never dance when you can hide yourself around the next corner and then laughingly yell “BOO!” when everyone else finally catches up with you.

She loved to steal our phones and wallets and keys from our pockets, not to hide them away or do anything mean or malicious, but to wave them in front of us and laugh her way through an affectionate, singsong tease. If there’s a world beyond this one, I hope whoever’s in charge has secured all the valuables. Not to prevent her from swiping them, which would be an impossible goal, but because she would be disappointed and bored if they were too easy to swipe.

Rebecca is not an angel, nor would she wish to be. If anything, Rebecca is now a poltergeist. On her sixth birthday, we had planned to go to Cedar Point that day and the next. Instead, that was the day she died… and on that day, a water main break closed Cedar Point for the entire weekend, because if she couldn’t go, then nobody gets to go. And in brief conversation this morning, I was literally about to say the words “lose electricity” when the power went out in our house.

The little stinker.

One of the hardest things for us in the last few weeks of her life was seeing how the tumor slowly and inexorably took all that sass and spice away from her. The loss of energy and emotion was horrible. We had fought so long and hard to keep her quality of life normal, and we had succeeded. It was only at the very end, just the last few days, that she moved beyond our ability to preserve it.

Underneath it all, she was still Rebecca. She got mad at her sister and brother because they would get to stay with us and she wouldn’t, and then she forgave them because she understood it wasn’t their fault and she loved them so much. She gave us disdainful looks when she thought our attempts to tease her were lame. She asked, wordlessly but clearly, to hear her favorite stories. She told us she didn’t love us because she wanted to push us away, to lessen our pain. But when we explained to her that the joy of loving her was worth any pain, and that we could never stop loving her regardless, she relented and admitted the truth that we had never doubted. The last words and gestures that passed between us were of love.

In her last hours, she was surrounded by love, her room filled with people who loved her as she loved them, never leaving her alone for a second. We held and snuggled her all the way to the end, all of us together. And the people in that room were surrounded by the love of those who loved them, and they by those who loved them. All of that love focused on Rebecca. She deserved it. But then, so does every child.

Now she is gone, and we who remain are devastated. It is only together that we will move forward. Community has sustained us the past months, and made it possible for us to do everything we could for Rebecca and Carolyn and Joshua. Community will help us get through this. Our hearts have been broken into uncountable pieces, but we will help pick up those pieces together. I am beyond heartbroken that she is gone, but I will never, not for an instant, ever regret that she came into our home and our lives.

What matters in this life is not what we do but what we do for others, the legacy we leave and the imprint we make. Her time may have been short, but her spark illuminated so much in that time, touched and warmed so many people, and for the rest of our days we will all be changed for the better. That is what Rebecca did for all of us. And any of us would be beyond fortunate to have lived our lives with half as much meaning, or a tenth as much joy, as she lived hers.

She’s been gone for half her life. Half the time she had with us, elapsed in absence.

It’s still hard to comprehend. The old adage that you don’t get over it, but you get used to it, holds true. I’m used to her absence. I still think of her daily, usually multiple times a day, reminded one way or another. The reminders can spring from moments of joy that I suddenly realize she isn’t there to share, or from moments of profound sorrow over the state of everything, or just from spotting an unexpected flash of purple.

In the initial grieving, each moment of remembrance was like an enormous jagged spike driven violently through my chest, impaling me in an anguish I could not actually feel, even as I experienced it. My breath would hitch to a stop as I remembered the hitch in hers, as her body finally relaxed and the space between each breath got longer and longer, even as each breath was a fractional bit fainter than the one before.

My grief has similarly faded, these last three years. That terrible, transfixing pain has its own slope of decay, if you let it decay, dropping into a long tail of quiescence. If you’ve ever suffered a major injury, then you know what I mean. The initial pain is overwhelming, filling your entire awareness and leaving room for nothing else. That fades into a massive suffering as the injury is addressed. After the initial recovery, you come to live with a constant pain that is manageable, if utterly draining to endure. After a longer while, that becomes an ongoing ache, easily aggravated but also somewhat possible to ignore for short periods. And so on and so on, until months or years later, it’s a twinge you get every now and then, maybe a dull ache when the weather changes or you shift your weight the wrong way. Something you can live with, but also something you can never fully forget.

I can still sometimes feel the spikes that were driven into me, but distantly, around the edges where the scar tissue grew to fill the latticework of grief. As you might feel the shadows of the pins that put your leg back together, or the echo of the holes drilled into your skull to seat the halo brace.

We went to visit her grave this afternoon. It was our first time back since last year’s memorial visit. I’d thought of going from time to time in the intervening year, and resisted. I’m not entirely certain why, but it felt like the right decision. Not the decision I wanted to make, but the right one.

We were astonished to find that the artificial flowers and rainbow spinner placed there last year were still in place, faded and worn. The groundskeepers had carefully mowed around them. Perhaps that’s why the small Rainbow Dash toy was still there, still nestled against the top edge of the marker. It, too, was faded from the year of sun and rain and ice, but still had the same jaunty pose and smiling face.

It reminded me of Rebecca, and I smiled a little.

I noticed dirt had settled into some of the letters, and resolved to return another day to clean them out. Maybe polish the granite face a bit, to see if I could restore some of its initial luster. Nothing I could do would preserve that forever; the slow decay of time and weather never pauses, not even in deference to the memory of a little girl who lived too short a life, no matter how fully she lived it.

In the long run, the marker will be worn smooth, settling through a long period of becoming harder and harder to read until eventually, it fades completely from understanding. That can’t be avoided, but it can be postponed a little bit. As long as I’m here and able, I can put in a little periodic effort to undo some of the damage done. Put things partly right. It might seem futile, but sometimes small acts in the face of futility is the best you can do.